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“Same Brain, Different Operating System”

I love metaphors. A few days ago on I scrolled by a meme
on Facebook related to autism awareness. It got me thinking about eating disorders and brain
science and my work with F.E.A.S.T., and I thought it would be a great title
for a blog entry, so here goes…

I’m sorry to disappoint anyone, but this isn't going to be
a blog on neuroscience or technology or even directly about eating disorders - it’s
about advocacy and relationship building and how F.E.A.S.T. works to support
our mission and achieve our goals.

I have been puzzled by the latest flurry of "old vs
new" attitudes between ED advocacy groups with similar goals which is
occurring on social media.

Of course some groups are older than others, but that
doesn't mean that a "new" approach is any better than another group's
"old" approach. Every group needs to work according to their own
operating structure, which will be different,
not "good /bad" or "old /new."

Basic Advocacy is Simple.

Anyone can advocate for something they believe in. On the
surface it is a simple recipe:

1. State your mission.

2. Set your goals.

3. Do your research.

4. Plan your strategy.

5. Get to work.

Along the way, you will probably find others with the
same goals. Collaboration is good and can broaden your voice; but, as a wise
friend once told me, collaboration is about relationships, and relationships
are far from simple.

F.E.A.S.T. began with simple. A group of parents found
each other through whatever networks they could - conferences, online groups,
letter writing, phone calls, etc. They identified a similar mission and similar
goals and they got to work. The “Around the Dinner Table” forum was the result
of that first effort, and continues to be a place for caregivers to connect and
share resources, experiences, and support each other through the crisis that is
a loved-one with an eating disorder.

This group realized that the ineffectiveness of many
eating disorder treatments, the lack of research, the lack of support for
families and the stigma around mental illness were creating huge barriers to understand
and treating eating disorders, and were breaking apart families needlessly.

By creating F.E.A.S.T., choosing a Board of Directors,
establishing a set of Principles, adopting by-laws, and filing for legal status
as a non-profit organization, F.E.A.S.T. was poised to start building relationships
with other organizations in the eating disorder community. As F.E.A.S.T.'s
membership grew, the voices of families and caregivers began to be heard by
professionals and other advocacy groups in the field.

F.E.A.S.T.'s Primary
Mission is to Empower Caregivers.

2. We provide access to facts and resources for
caregivers to educate themselves and others about eating disorders.

3. We provide public spaces for discussion of ideas and
advocacy issues.

F.E.A.S.T.’s discussion spaces are public because we
believe transparency fosters a broader dissemination of ideas, and a broader
point of view for all stakeholders in the eating disorder community. F.E.A.S.T. does not censor discussions even
when they do not align with our principles and our discussion spaces are
moderated because we hold high standards of conduct.

Censorship is not the same thing as refusing to tolerate
bad behavior. Kindness and civility is our first and most important rule and we
will step in to stop personal attacks, or self-promotion and will occasionally
close down a thread when a discussion becomes disrespectful, hurtful, or when others
use F.E.A.S.T.’s spaces to promote their
own agendas, events, or initiatives without permission.

Censorship is also not the same as setting requirements for
participation. Our ATDT Forum is public for anyone on the internet to read;
however, only caregiving members may join the discussion. We have important
reasons why we do this, but that is the subject of another blog!

Relationships are Complicated.

F.E.A.S.T. believes that educating caregivers gives them
the tools to advocate, and we are excited to see new advocates starting new
groups with similar goals. Unfortunately, sharing goals doesn't always make for
effective collaboration with groups that have different missions, different strategies,
and different operating procedures. Alliances work when relationships work.
Relationships work when we respect each other's differences.

F.E.A.S.T. believes in a
collaborative approach to advocacy that requires mutual respect.F.E.A.S.T. welcomes opportunities to collaborate with
other non-profit organizations in the eating disorder field, and individual
advocates and other advocacy groups working on specific initiatives. These
proposals are brought to a committee or the F.E.A.S.T. Board and discussed
before a decision is made to partner with or join an initiative, support a
position paper, publicize an event, etc.

F.E.A.S.T. understands that challenging an idea is different from challenging an
organization or an individual. F.E.A.S.T. believes in having difficult
conversations in order to open doors and build relationships. F.E.A.S.T. has never shied away from
criticizing ideas that contradict our principles or scientific fact, but we do
not find it productive to do so by publically putting a potential ally on the spot,
or by demanding insight into an organization’s internal operations or
discussions.

F.E.A.S.T. plans its advocacy efforts through our Board
of Directors, Committees and Task Forces. We welcome new ideas, constructive
criticism, and individuals who want to join our volunteer pool and help with
specific tasks or programs. F.E.A.S.T. is only as strong as its members and its
relationships and we hope you will join us or work alongside us in the spirit
of respectful collaboration.

Beautifully stated; clear, concise, to the point and so very relevant. Personally, I am so very grateful for your post Leah and of course to F.E.A.S.T. as without the resources of and the support of ATDT, I don't think my child would be in full recovery. The lack of resources and treatment is what threw me into the world of advocacy. I remember so very clearly the day of Dr. Ruth Sullivan's talk at the 1st FEAST conference back in 2011 and her advocacy journey within the world of Autism. She would be so very proud of your post. Let's continue making the ED advocacy community strong and powerful with a beautiful spirit.

Dear Leah,Thank you for saying that F.E.A.S.T. welcomes new ideas and constructive criticism. Here's some constructive criticism: On the F.E.A.S.T. website, your organization claims that "professional treatment is essential" after a diagnosis is made of anorexia nervosa. (Click on the following, in order, after entering the site: Learning Center, Treating ED's Overview, Evaluating Treatment Options, Making a Treatment Plan.) However, the idea of using professionals to treat anorexia nervosa is controversial. The best professional treatments result in full recovery in fewer than 1/2 of all cases. The most popular professional psychotherapies, including CBT, psychodynamic psychotherapy, family systems therapy, and long-term psychiatric hospitalization/ residential treatment, have generally reported success rates in the range of 1/4 to 1/3 of cases in clinical trials. At the same time, many of these standard treatments have harmful side-effects. As a result, many parents have chosen to treat their kid's anorexia nervosa without involving professionals. Many of these parents are achieving excellent outcomes. A high percentage of their kids are recovering. The families are avoiding the high financial cost of including professionals. Therefore, it is difficult to support the claim that professional treatment is "essential." Consequently, I recommend that the F.E.A.S.T. website be amended to read: Some families might wish to involve a professional, or professional team, in the treatment of a child or teenager who is diagnosed with anorexia nervosa. Other families, however, after informing themselves, may wish to treat their child's AN directly without involving professionals.Regards, Chris

Dear Chris,Anorexia nervosa is a life threatening illness. Are you proposing that parents take full responsibility for assessing the physical health of their child, without engaging a professional? Treatment of anorexia involves a lot more than psychotherapy.

Dear rosesarered,I'm not sure I understand your question. Suppose a teenager is underweight and has developed restrictive eating patterns. What does a professional know about this situation that many parents don't already know? Chris

Chris, First, I would like to thank you for allowing me to warn everyone reading this comment that SUGGESTING TO FAMILIES THAT THEY CAN TREAT THEIR CHILD’S ANOREXIA BETTER THAN A PROFESSIONAL OR WITHOUT INVOLVING A PROFESSIONAL CAN HAVE POTENTIALLY DANGEROUS AND LIFE-THREATENING CONSEQUENCES.

In fact, this is a case where I feel F.E.A.S.T. could, and probably should, censor this comment in order to prevent potential harm to a seroiusly ill child.

Second, I would like to thank Chris for referencing the F.E.A.S.T. website. I encourage everyone reading this blog to check out the page that Chris has pointed out (after I have a chance to fix the broken links!):

http://temp.feasted.org/TreatingEDs/MakingaTreatmentPlan.aspx

I have also copied the paragraph from this page which Chris has quoted from, so everyone reading can see the full context:

“Parents: choosing the most appropriate treatment for your loved one is one of the most important parenting decisions you will make. Although a diagnosis of anorexia, bulimia, or other eating disorder may be frightening and intimidating at first, eating disorders are a treatable illness and professional treatment is essential. Not all treatment, however, is equally helpful nor is there one approach with all the answers. It is very important for parents to be armed with information, courage, and the knowledge that we are our child's best assets in the recovery process. Use the information below to help you ask good questions, learn what you need to know, and take action.”

I think the full text conveys very well the idea that there are many different treatments out there for many different types of eating disorders, and that parents will need to research, choose a protocol to start with based on the recommendations offered to them, and work closely with that provider to insure that they remain involved and part of the process.

F.E.A.S.T. is an organization of parents. Most of us are not medical professionals or psychologists and our responsibility is to offer the most up to date information available from current clinical guidelines, current professional journals, and the recommendations of our Advisory Panel on our website. I am puzzled by your statement that “the idea of using professionals to treat anorexia nervosa is controversial,” as that is the one statement that I believe everyone in the entire professional field can actually agree on!

I notice that your list of less than effective therapies does not include FBT which is a protocol that relies on active family involvement and takes place in the home as long as the patient is medically stable. I agree that many parents have successfully treated their children with anorexia in a home environment, but I have rarely heard of one that did not consult with medical or psychological professionals before or during this process.

Are you saying that parents should not even seek a professional diagnosis, or not consult a medical professional to monitor for refeeding syndrome or other serious medical conditions? To do so would put parents in a precarious legal position for not seeking professional treatment for their child. It is one thing to seek out a different treatment “against medical advice,” but another entirely to take on the full responsibility of diagnosing and treating an anorexic child completely on their own.

I am also curious to know where these parents should go to “inform themselves” well enough to treat an anorexic child. F.E.A.S.T provides factual information and peer support, but our website is no substitute for professional consultation and a checklist of medical tests to run is no substitute for a thorough physical exam by a qualified doctor.

Once again, readers, be aware that the statement Chris has suggested we put on our website is dangerous, and I ask you, Chris, to think carefully about recommending to anyone that they can and should do this all on their own.

Talk to parents of children who have died from anorexia nervosa. Many of those children were under the treatment of professionals at the time of death. Involving a professional is definitely, therefore, not going to guarantee a good outcome.Yes, the best professional treatment (if you want to involve a professional) is FBT. However, in a study published last year, the success rate of FBT was only 33.1% at the end of the treatment.http://www.ncbi.nlm.nih.gov/pubmed/25250660

Unfortunately what is happening on the facebook page is not reflective of the ATDT forum. It was always moderated for civility. There are people who often read both silently, and to be honest the current very personalized and directed rancor on the facebook page is not going to encourage folks who are too scared to post at all. Sorry, but think of those whom you are losing, and the help they could be getting instead....

Leah- Clear goals. I am ever grateful to F.E.A.S.T and the ATDT forum. My understanding of ed's was challenged and I feel like I'm on track and now offer good advice to parents. Our journey would have been shortened by years, I truly believe, had we knows about FBT and having the family be an integral part of our daughters treatment and recovery. Keep up the good fight. I am a huge supporter of your techniques, your goals and your strategies to help carers.

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